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Reply by Melinda
08 Jun 2014, 5:09 PM

Just finished going through "more" boxes of crap (pardon my language!) and it reminded me of you! Wink   Stan was very crabby last week and just picking for a fight...I finally blew up and let him have it about his behavior and attitude towards me...and then stomped off upstairs.
Well he came up and said he was very sorry...so I asked him what was really going on!!
Turns out he found more lumps on the back of his neck...and I knew his spine and shoulders where very painful. I had been rubbing cream on them, etc.. but the lumps where a shock.
That poor man..no wonder he was upset. Now we have always known he has bone cancer in certain spots...but I have always heard terrible things about bone cancer. And that it is very painful...my biggest fear is pain for Stan. Anyway, hopefully the Doctors will get to the bottom of it all next week. Okay my break is over...time to tackle crap again...hope all is well with you.
Take care. Melinda
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Reply by marstin
08 Jun 2014, 10:23 PM

Hi Melinda,

Today I'm doing the same thing as you, going through boxes of stuff. I've found myself less interested in keeping some of the things that in the beginning were so difficult to let go of. That's a plus. My brother in law has been cracking the whip with me on getting through the stuff and I tend to get my back up a bit. He acts like I'm dragging my butt but I think he forgets that I've been doing this for nearly 2 years and I'm so burnt out. Him and his brother in law both made comments the other day concerning what they think I'm not getting done and I have to be honest, I don't think it's up to them to determine. They are getting payed to do the work they are doing, not to be my bosses. I warned them that my oldest was graduating from her college program on Thursday and that I wouldn't be available. They still came over to work and kept giving me looks and making remarks. Lol! It makes me want to stay single. I don't do well with being told what to do.

Poor Stan. I can imagine the panic he was in having found new lumps. Len often hid his fears but it showed in his eyes. That you were at least able to get to the bottom of what was bothering him is a good thing. Maybe he'll be able to open up to you a bit more so that you are aware of what is going on so that you can figure out how to deal with it. Is Stan on any heavy duty medications yet? Once they forced Len onto Methadone he changed so much. It's a horrible drug. It still makes me angry that they wouldn't try something else when he was so adamant about not wanting to take that or at least allow him to stay on the drug that was working.

Well, guess I'd better get myself back in motion. Hope your mountain of work is diminishing.

Hugs,
Tracie
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Reply by marstin
20 Jun 2014, 5:32 AM

Hi Melinda,

Haven't talked to you for a bit and wondered how things are going. Did Stan find out anything from the doctor about what's going on? How's your state of mind?

Things are crawling along here with the clearing and the reno's. I've given up on the timeline I set for myself and it will all be done when it's done I guess.

Anyway, when you have time please let me know how things are.

Hugs,
Tracie
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Reply by Melinda
20 Jun 2014, 11:38 PM

Hello! Nice to hear from you, even though I know you are so busy. I appreciate you taking the time to check up on me. Stan has taken a turn for the worse. He is in alot of pain with his shoulders and upper spine. He had a bone scan today and we see the Doctor on July 3rd for results. And no more chemo...and maybe some radiation on the lumps on his back. The Doctor will determine that in July. Last night he decided to use the whirlpool tub that we have. He always takes showers but thought the warm water, etc..would help. And it did...but I had to help him in and out of the tub and basically wash him. He is so stiff and sore.
I was shocked at how thin he is...and when I washed his back I was stunned. He has what I call "cancer veins" all over one shoulder blade and towards his spine. The cancer on his neck is the same way...quess the cancer causes all these veins for a good blood supply. God!! And of course Stan will not take his pain meds properly. He had two Doctors talk to him about this but I am sure it went in one ear and out the other. He only takes 1mg pain pill before bed...the Doctors want a pill every 4 hours....oh well...eventully Stan will have to do it right...I just let it go..its up to him and I am not fighting with him about it. I am finding he is getting very clingy and wants someone with him all the time. Right now he is resting in the bed and I was going to do stuff downstairs..but he wanted me to stay upstairs...so what can you do! I'm on the computer complaining to you lol! In one week I will be down to part time at work.. so that will be good. And everything is in place for palliative care. And help for me also. There are volunteers who will sit with him if I need a break, etc...
And the health care nurses are in every day and will just step up their care as he needs it.
I have given up on keeping the house and just doing the bare minimum to keep the place presentable. It seems just as I am starting to do something, Stan has a need or something...poor fella! I find his illness so consuming..and I find he does not seem to realize that he is putting alot of demands on me. Nor does he ask how I am doing now. I had that scope in the hospital the other day and he did not ask about it...just wanted me to drive to town and buy gas for the lawn mower when I got back. I had to explain to him that I was wiped out from my day and could the gas not wait. But I am sure his behaviour is normal for someone with cancer...their cancer is their life and other stuff is not a concern...now I understand why caregivers have such a hard time. I had no idea it was so much worry and care and life changing. And the stress is something else! Wow...don't know how you survived it Tracie!! It sure puts alot of stuff on "hold"....Well duty calls...nice to touch base with you ( and don't work too hard! lol!) Melinda X0

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Reply by marstin
21 Jun 2014, 2:43 AM

Hi Melinda,

Thanks for filling me in. I think the hardest part for me was watching how thin Len became. It's one of those things that people who have never witnessed it can't even imagine. We caregivers see things that would make others run away. It's an exhausting journey and in many ways a lonely one. I remember just feeling like I was floating through life in general and not showing a lot of emotion. It's hard enough to cope with the situation without allowing the sadness to take over.

Stan must be feeling very frightened by all of the changes that are happening to him. It's amazing how little pain medication he is taking but if he doesn't feel he needs it then that's a plus too. I remember Len being in so much pain that he doubled up his pain patches one night and tried to get up to go to the bathroom in the middle of the night and fell multiple times. Of course I didn't know about it until morning (that's when our bedroom was being reno'd) when I went downstairs to check on him. He was pretty battered and bruised and had to be taken to the hospital.

It's good to hear that you will be cutting your hours at work and that you have everything in place as far as nurses and helpers. I'm sure that you will need stress breaks along the way. Yes, I think that teminally ill patients do reach a point when the rest of the world doesn't really matter to them. I guess it's because they are putting everything they have into fighting this horrible disease. I remember just doing the bare minimum when it came to cleaning my house too. If it was clean enough in the areas that he was I didn't worry about the rest of the house. You're only one person doing the best that you can. Housekeeping can wait.

You are doing incredibly well Melinda. I'm sure that you have your moments when you want to just run away but you have learned not to stress over the little things, you roll more with the punches. Not to say that it doesn't bother you, just that you have found a way to cope.

So, how did your scope go? Have you heard anything back yet? I still haven't heard a word about the ultrasound on my heart so I'll have to take a trip to the doctors one day soon and ask about it. This stupid house has me so depressed lately and I just can't seem to make any headway. The ensuite has been one headache after the other and very expensive and the mess that keeps getting left behind really irritates me. My realtor phones and emails me for updates and it makes me very irritable. I just want to scream. I don't want to leave my home and my neighborhood. For her it's just another sale, for me it's the end of life as I have known it. She can wait for me to be ready to put it on the market.

Next month it will be the 2 year anniversary of Len's passing. The girls and I are going to go over to the Island for a few days and relax at his family cabin. I still haven't transferred his share into my name but have started getting the information on what has to happen to do that, Of course it's another big expense to do it. His brother is learning so much from me on all of the in's and out's of an estate. I told him it must be my job in life to be a teacher. Lol! I wish I could have learned from someone else's experiences instead of my own.

I hope that the sun is shining there and you are finding some time to kick back with a book and watch the water flow past your house. Kayaking time yet?

Hugs,
Tracie
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Reply by jorola
27 Jun 2014, 10:50 PM

Hello Melinda,

I just wanted you to know that I think you are a very strong and amazing woman. I know this journey has been very hard for you. Tracie has been an amazing support to you and I am glad you two connected so well. I hope both of you are doing well. Send good vibes and hugs to you both.

Jodie

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Reply by Melinda
28 Jun 2014, 1:17 AM

Awwww! Thanks Jodie! Yes I have a feeling that Tracie has helped a good many people on this site. She is amazing! She always makes me feel better and always takes the time out of her busy day to write to me and help. Sometimes I feel she is my life line and someone who so understands when I pour my heart out. And such a comfort....so glad I met her and so glad I found this website! Melinda
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Reply by marstin
28 Jun 2014, 2:08 AM

Hi Ladies,

Thanks so much for your kind words Melinda. There is a special magic that happens on this forum and although none of us ever expected to find ourselves in a place like this, we find strong bonds that we wouldn't have found otherwise. I think for each of us we find what we need in the way of support and understanding and although I've been walking this road longer than some, I still gain a comfort that I haven't found anywhere else. I think we are all fortunate to have a place to come to and be able to share our pain.

So, how are things Melinda? Is Stan still fighting the pain meds? You know it's his stubborness that keeps him fighting all that is thrown at him.

I'm sure that it will make a difference to cut back on your hours at work. Not that you will work less just that you won't be away from home so much. It's never easy doing the caregiving and you have come so far in accepting what comes at you and not fighting it so much. That's a difficult thing to do. I'm sure you still have times when your frustration builds but from what you write, I see such a change in you from when we first started talking. Are you still working on clearing things out? I'm struggling with getting anything done but bit by bit I'm working on what I call the 'creepy crawly' areas of the house. My ensuite is nearly done and tomorrow I will be able to have my first shower in my new bathroom. Not totally done in there but close. I thought I'd be excited but it's been such a headache that it took the happy out of it. My realtor emailed me last week to see how things are going and I still haven't answered her back. I hate feeling pushed and this will happen in my time and my way. I'm too darn tired to care.

Well, hope you give me an update when you have the opportunity. Is the sun shining there? Gray skies here.

Hugs,
Tracie
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Reply by marstin
05 Jul 2014, 5:49 AM

Hi Melinda,

Not sure why it's usually a Friday night when I start thinking about you and wondering how you're doing but it seems to work that way. How are things going? Any changes with Stan? How are you coping with being home now?

It's been a tough week for me with the work not moving ahead except at a snail pace and some family drama that derailed me emotionally. I sometimes think I'm better off staying away from family because they tend to be so darned judgemental when they have no idea what it's like to walk in my shoes. It doesn't help that the anniversary date is just over a week away and everything is really overwhelming. I'm hoping that a short trip away from here will help ease my mind a bit and I can actually do a bit of relaxing. I haven't ventured anywhere for a year and know I need to recharge my batteries so that I can get this place finished and get out.

I hope that things are calm for you and just wanted you to know I was thinking about you.

Hugs,
Tracie
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Reply by Melinda
05 Jul 2014, 12:22 PM

Hi there! It's a quiet Saturday morning. Can't see the river..its covered with fog..but its so calm and peaceful. Hope when you are reading this you are back from the cabin and feeling calm and peaceful also. Sorry about the anniversary coming up for you and your family.
I know exactly how you feel. Its sort of a lingering sadness that builds up until the day arrives. For a couple of years my daughter and I would always make sure to be together the day her sister and my youngest daughter died. But its been five years now and the pain has dulled somewhat. Holidays are still hard..and birthdays. Speaking of birthdays, mine was yesterday and Stan bought me the most beautiful Ruby Ring! He told me how much he appreciated me and that he knew it was hard on me with him being sick. I was so touched I cried. We where also married for two years yesterday (yes, we got married on my birthday!)
Anyway we where at the Doctor's on Thursday and the Doctor told Stan that he did not think radiation was an option anymore. And he told him all the spots the bone scan showed. Skull, shoulders, sternum, back, one hip, one arm. All the spots that Stan is complaining about. Now, Stan had a fall on the cement floor a couple of weeks ago. He was ok and there was no bruising, etc...but he is now telling everyone that the bone scan is showing bruising where he hit himself during his fall. Aren't his rose coloured glasses amazing!!!!!!!!!!!
But another thing is going on now..he is having alot of double vision that comes and goes.
The Doctor says they would do a skull scan if it gets worse...Stan did say to me yesterday that he would not agree to radiation to his brain..but we'll see. So the Doctor does not want to see us for four to six weeks now...but to call if there was a problem. So this is very telling to me. Oh and yes, Stan is now taking his pain meds...but he is dosing himself which is not a good thing. He forgets if he took a pill and then takes another. But they are only 1mg so apparently its not a concern right now...eventually I will take control of them.
Oh and his neck is bleeding again...so the radiation to stop the bleeding only worked for a month. He bled alot a couple of days ago in his sleep. I managed to get the blood out of the sheets and the bed skirt. I put plastic around the box spring and I already had a mattress protector on the mattress. Thank goodness! So everyday is a challenge now...which I am sure sounds familiar to you.
No, I have not had the kayak out yet, but soon....my neighbour and I are going into the city on Wednesday and I am buying myself a new bike! Very excited about this! I am sure it will help alot with the stress...can hardly wait! Yes, I am enjoying my cut hours and I am very fortunate I have a job where I can do this. Getting caught up on alot of stuff and still have time for Stan and his needs..don't feel as frustrated as I did when working full time.
Lordy, I better stop or your eyes will be glazing over!! lol!  Thanks again Tracie for listening. You take care and will chat soon.  Melinda
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